Yesterday, I got most of the way through my fantasy bucket list before I ran out of oomph. maybe that is for the best as these are the ones that are most important to me or closest to my heart.
Set up a chat room dedicated to those that are terminally ill . I have written of how knowing you are dying can bring about feeling of terrible loneliness. Now this does not in anyway reflect on the wonderful, loving support provided by our care givers, God bless every one of them. It is just no matter how hard they yet may try it is impossible to relate to, to understand what that patient is going through mentally and emotionally. You have to be in that position to really understand what it is like.
I think I can best illustrate my point by reminding all of Meg. Meg was a lady in Scotland that I met here through the blog. She graced us with a few comments plus we exchanged emails and even chatted via Skype.
Meg knew her time was short. Cancer had spread through her body, she was end stage and wracked with pain. She was taking major pain medications which while easing the pain often put her to sleep. Her sleep patterns were determined by the timing of the medications. This often resulted in her being awake at 2 or 3 in the morning at which time naturally all others were asleep. She would face that terrible loneliness. She mentioned many times of how wonderful it would be to have a chat room. A chat room dedicated to those feeling that loneliness. They could share thoughts, feelings, fears be there on a 24 hour basis for each other. It turns out the pain and loneliness was too much to bear and Meg took her own life to end it all
I think such a chat room is a wonderful idea, I just have no idea how to go about it. I did in fact try to set up a chat room along with the blog here but it was of very limited scope and didn’t really work. It seem then that word press even cancelled that option and it no longer exists. I do think this could be a project that could help so many I just really have no idea how to even start. Any suggestions.
Another on my list will be coming tomorrow. For any that may have followed the blog for a while you may even guess what it may be. If you guessed random acts of kindness you are right.
Hi Bill … a dedicated ‘room’ sounds like an ideal – and one many may well find so helpful … I know of your connection with Meg – and her thoughts on her situation were refreshing … Cheers Hilary
i think a chat room would be such a wonderful thing to have. You recently mentioned your blog was read in over one hundred countries and I imagine that would mean that given different time zones there might always be someone around in the chat room even if it might be the middle of the night for some and the middle of the day for others.
The loneliness you describe that comes with knowing you are dying has been a companion of mine for such a long time. I think it is one thing to say that we all know we will die one day, but a very different thing to actually be experiencing that dying process. For me, I am truly dying alone and while I have made peace with that and understand how I got here, sometimes it’s just plain sore to know this is how my life will end. I have been fighting to stay alive since I was ten years old and am now in my mid forties. At a time when I should have been out gaining independence, forging a career and making friendships and relationships, I was in and out of hospital and when you are only ten years old that is frightening for other kids (and adults) to be around so they slipped away and my life has been marked by the loneliness that our society’s fear of death can bring. So, I find myself in the last part of my life story without any other characters to share my story with, to buffer the unknown ending that lies ahead, no friends or family to mop up the tears after another hospital visit chips away at any hope of a future, no-one to mourn or grieve.
But every night reading your blog I feel a ‘virtual’ closeness to the regulars that pop up with such warmth and support. Your blog makes mention a lot of the love and support of friends and family and your own family sounds amazing but for me and others like me who are truly experiencing their dying process alone, I hope you can taste just a flavour of the precious and invaluable gift your blog has given us. While I know the phone won’t ring, the doorbell won’t chime and my only contact will be with medics who I affectionately think of as the ‘voices of doom’, there have been many times when I have returned home from the hospital, sad, scared and fighting the tears despararte for release, turned on the compiuter and visited your blog and felt the warmth of companionship, understanding and support just waiting, asking nothing of me and offering unconditional understanding, even if my story hasn’t been shared. A chat room for those dying might seem a bit glum to some, but for me I would imagine such a place to be full of the chatter of everyday life, things that are going on in the world, mixed with times when the story is dominated by the dying process. A space to breath, to talk and not talk about dying with others who ‘get it’. I do hope it comes to life.
Apologies for the long comment, it took me a while to feel confident enough to join you here and when I did, I just couldn’t stop!
Hello FairyFlutterings and welcome to the blog. I am truly sorry to hear of all you are going through and to be facing all of this alone. I just can’t imagine.
Please know you are no longer alone. Here you have come across a loving, caring, supportive family of friends that welcomes you into our little group.
No one should have to face all of this alone and you don’t have to any more.
I invite you to join right in become one of our little group.
I have been trying to find a dedicated but moderated chat room (as I am happy to read is Mel) with out much success but we will keep working on it.
We would love to hear more of your story or at least as much as you are comfortable sharing.
I am going to set up a video chat with Beatrice and would be happy to do the same with you should you wish.
I am very glad you summoned up the courage to put up you post. I hope many more will do the same
(((((((((( the fairy )))))))))))))
Bless your heart for mustering up the courage and just saying what was true for you. (I adore that you think you let a long comment…..LOL I’ll try not to excede yours, but I make no promises!) 😉
On one hand, reading this made my heart hurt–I don’t believe anyone should have to walk through this stuff alone. (Oh, but I do know the fear sends people running in the other direction sometimes….. *sigh* Horribly human of them, I know.) On the other hand–my heart sang! It’s so good to know that there’s been HERE for you to go to.
It’s good–whether the story is shared or simply held as you read here and get a sense of being connected/honoured for what’s going on for you–it’s good.
Yes, I know you’ve been hanging around with us for a chunk of time–and I hoped for you (and others) to find their voice. You found it. And as scary as it is to sometimes just toss it out there…I’m very glad for you….and for us (cuz I’m a bit like that…..). It means dialog and a shift of the connectedness-it means an option for shifting some of that alone-ness. No, I know it won’t go away–but an easing off and a safe place is a valuable thing.
This truly is a loving community focused on a common goal–to support and walk through some of this ‘stuff’ WITH others, no matter what role you’re playing in the circumstances. We’ve loved each other and others through some hard moments. But we wouldn’t do different, yaknow?
You found your voice–and I’m truly grateful for that.
I got to hug a fairy!! 🙂
Now how cool is that.
((((((((((( the fairy!! ))))))))))))))))))
Thank you for your kind and soothing words. Since I posted my comment I have felt less alone, a little less scared of what might lie ahaed and something inside has fluttered to life, perhaps a kind of hope that I do have the strength to cope with this, that it is okay to be unwell, to have a body that is failing bit by bit and will eventually no longer be capable of sustaining life, and to let others see that side of me.
i have been reflecting a lot on why it is that I feel comfortable here. When I hear or read stories in the media of someone experiencing the process of dying, I always imagine that I would be happy to ‘be’ with that person, unafraid of my own feelings of inadequacy at not being able to ‘do’ something and realising that the urge to ‘do’ something is more about my needs than theirs. But this idea of just ‘being’ with someone experiencing the last chapter of their life seems to be too rich for most people’s palattes and I think that since I have been dancing with death for most of my life it has given me the space to be comfortable around illness and death and that space is one that those healthy others seem to work tireless to avoid. I am not sure how much sense this makes but I think I have realised that when you enter the last chapter of your life you enter a special club where the agony of separation from the ‘living’ or ‘healthy’ is slowly replaced by the comfort, support and udnerstanding of those who have all but mastered their fear of death and are comfortable to just ‘be’ instead of ‘do’. I know my own story will end a little bitter because of you Bill and all those whose stories I have been silently absorbing.
Again I seem to be rambling on and I offer my apologies for that – I guess I have a lot to say after so many years of silence and loneliness!
I hope it is not inappropriate but as I am without friends or family (but fighting hard to let myself embrace the new friends and family here) I haver a question i would like to ask. I am at the hospital on Thursday for a ‘case review’ and while I know there isn’t much more they can tell me that should upset me, I will struggle to distract myself as the day draws closer. So, does anyone know of any good authors (I like thrillers)? This is something I would probably bring to the chat room if it materializes which I knwo you are opulling out the stops to make happen.
with love to all from a scottish fairy xx
Oh dear! Clearly I meant to say my story will end a little BETTER because of you you bill…….must pay more attention to my words in future 😊
LOL Made me laugh, Ms. Fairy!
I’m usually not one for thrillers, but I’m really into Peter May’s new one–The Blackhouse. It was recommended to me and I’m thoroughly enjoying it!
I’m going to hope all goes well with the trip to hospital. Regardless of what we ‘know’, it was always a struggle for me when the professionals said it, one more time….. *sigh* I’ll continue to hold you in thought and prayer, ma’am. You do know where to find us! 😉
And I think I ‘get’ what you were saying about a bit of what makes it ‘okay’ for you here. (frankly, I’m grateful you DO find it ‘okay’ to just be where you are, yaknow–I’m clear how much emotional and physical energy it took to ‘pretend’ so others felt ‘okay’.) Pretty silly to go around trying to make the world ‘okay’ with the state of affairs……but I did to some degree. I think I felt compelled to do some of that because of the children in my life. But it’s good to have a place where spending your energy doing that–isn’t required. I’m glad you know you can just BE where you are, here. Not one of us get to change any of the circumstances for you, for Bill…..for people we love and care about. While I wish I could, I know that’s not up to me–it’s simply not my ‘job’. You, Bill……others…..don’t need to make it look any prettier than it is. Doing that only perpetuates that isolated, lonely feeling. None of us want to do that, yaknow?
Anyway–pick up the book–it’s truly a good read (well, it has been…I’m still working my way through it!). And we’ll be thinking of you on Thursday. Ughhhh…if case reviews there are anything like here–take the book AND a TOY! 😉
I’ve commented on the chatroom ‘stuff’ on the prior posting. But I truly will do some digging and nosing around–I know loneliness is sometimes unbearable. I was one who went to chatrooms on a regular basis when I was in the midst of treatment and wasn’t allowed interface with human beings. I used them like crazy–I couldn’t stand my own company…it got me out of ME and moved me into ‘others’, which for me was a lifesaver. I can get stuck in the sadness with the best of the rest of ’em.
I agree with the fairy. Most times when I showed up in chatrooms no one was the wiser for the circumstances going on in my life. I needed some sense of NORMAL during a very difficult time. And like the fairy–being ‘sick’ drove some folks away because of their own fear and inability to deal with the circumstances. Being able to simply drop in and have a NORMAL conversation, to be able to ‘chat’ about other people’s ‘stuff’….was invaluable to me.
I wasn’t lonely. And there was some ‘normal’ in my life again!
So yes….do the research. I’ll go digging if you’d like–and I’ll email what I discover.
I’ll also confess that I’ve been wrapped up in MEMYMINE as of late. And I’ve not bothered to extend myself in directions that I could be extending myself. (see above–I can get stuck in the ME bit and wallow…..) I missed coming here for a few days because of that wallowing on the couch and doing poooooor Mel…… *sigh* What a dweeb. All you had to do was mention those ‘random acts of kindness’ and I took stock of what I’ve NOT done while I’ve been moping over a broken leg and stupid crutches. Like this is the biggest battle I’ve had to do in my lifetime?! *sigh*
I’m so human sometimes, it’s scary…….
(you can laugh at that…I did….)
So thank you for the reminder. (not that it was about me, even though it was about MEMEME…..LOL) I’ll get off this machine and go make a few calls. Even if the body can’t travel, fingers can go to the keyboard–phone calls can be made.
OH….and I can order pizza for the crew at work who’s been handling things in my absence so well! They adore pizza!!
I, on the other hand……like lasagna.
JUST remindin’ ya…… 😉
Mel, I think the chat room is a great idea if it can be set up administered and monitored properly. Anything you can do to help with that would be great.
What in the world did you get up to, a broken leg? All my best wishes go to you my friend
P.S. NO this is not the start of my ‘send a bazillion comments so we can reach that 10,000 mark’ crazy idea!!!!
It COULD be though. ROFL!!!!!!
Hey Mel, actually already have about 8,000. I hope that makes that total of 10,000 attainable
LOL. Oh good! That only leaves me with a couple thousand. ROFL. JUST kidding!
Gonna cross my fingers and stay positive that we can DO it!!!
Undoubtedly we can.
Sent an email with some chat options!
I’ll keep snooping around for options….and invite others to do the same.
(((((( Bill ))))))
Hey Mel, I got your email. I do thank you for the effort you are putting into helping me with this. I checked out a couple of the sites you found and I think we could be on to something. Will try for a post later but really need my nap
Thanks Mel, for the recommendation and the support. I will order the book tomorrow. It was my birthday today so I will treat myself and distract myself at the same time from the soreness of another birthday that the world was unaware of and the part of me that hopes it might be my last, or at least the last lonely one. Sending sprinkles of fairy love to all xx
happy belated birthday, sorry I haven’t responded sooner. For myself I enjoy pretty much anything written by John Grisham or Sidney Sheldon. Now hey I do have to put in a plug for my very own cousin Stevi James and no I am not getting anything for promoting her book.
I am glad you are feeling comfortable enough to join in the conversations here and do hope you will continue
Thinking of you, fairy–hoping the hospital adventure wasn’t too taxing for you.
Awww……thanks for the fairy love. And belated Birthday greetings! I’ll hope the book makes for a nice prezzie for you. If you don’t enjoy it……ummmm…… You can always get a bit of glue open the book and glue the pages along three sides….and to the back of the book. Find a square pattern–cut through the pages with an exacto knife until you’ve met the depth you want–and voile’! Secret place to hide goodies!
*hugs* Happy (belated) Birthday Ms. Fairy!